Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

Grieving our son Joshua

2 weeks ago tonight we lost our 2 year old son Joshua to undiagnosed Addison's Disease. (the autopsy gave us the diagnosis) He had very unusual tan skin (with no tan lines) for about 1 year and I couldn't get anyone to take my concern seriously since this was his only obvious syptom. Through persistance I finally got a referral to see a pediatric endocronologist. The appointment will be in another 2 weeks. (I think I may show up to the appt. with pictures of my son Joshua). He was amazing adorable boy. I had no idea that a fever with vomiting would suddenly kill him. We are at a loss. Our Doctor's say Addison's is very rare in toddlers and that is why they didn't take his tan skin as a sign of Addison's.

I am not surprised to know they couldn't diagnose your son in time for him to be saved. For me I couldn't even get a referral to an endocrinologist from a doctor who believed I had problems. So I finally used a toxicologist (who was also incompetent) to give me a referral because he couldn't figure out what was wrong with me either. After being turned down by so many doctors I decided I would lie to get some answers. I said I thought I was peri-menopausal (I wasn't) and that I might be getting diabetes all along knowing something serious was going wrong with my adrenal glands. I had an obvious Cushing's like syndrome which conventional medicine says is due to (when it's not Cushing's (tumor)) alcoholism or depression. I had neither. Mine was due to mold exposure. Also mine was secondary adrenal insufficiency meaning it's in the hypothalamus vs. the adrenal glands.

Please message me if you want to talk.

Our healthcare system in my opinion is corrupt. If you want a toxic vaccination they will get you in the door as fast as they can. If it's a pharmacuetical drug no problem but if it is actually helping someone they don't want to do it for some reason. I'm mad as hell at the way things are.

I was first diagnosed with Addinson's in 1997; and it took the Dr. 3mos. to diagnose me. Addinson's is very hard to diagnose, as it's symptoms are masked as other diseases. In my case; the Dr. first said I had the Flu, then Bronchitis. Finally after 3mos. of different diagnosses; he said I had Addinson's. I then had to find out what Addinson's was; and I got pretty scared at first----until I was assured repeatedley that it isn't a life threatening disease.

In saying this to you; I'm also really sad that a young life was cut so short. Please let me know if there's anything I can do for you. My prayers are with you.

I am so broken-hearted for you that I don't even know what to say. I am SO, SO SORRY for your loss. A parent should never have to lose
a child, especially to something that could have been so easily avoided. My heart goes out
to you and your family.

Unfortunately, you are not the first mother I have run across with this horrible story - Addison's is somehow such a zebra diagnosis that doctors NEVER seem to THINK OF IT! I was actually diagnosed by a gastroenterologist that my internist sent me to as a last-ditch-effort to find out what was wrong with me; after hearing my symptoms he guessed that my problems were adrenal and admitted me to the hospital immediately. If he hadn't, I doubt very much that I would be writing you this post right now.

You can have Addison's in one of two forms: primary or secondary. If your disease is primary, your were born with it and have to live with it your entire life. Secondary means that you acquired it at some point in time, usually through steroid use (when we take steroids, in my case for asthma, they take over for our adrenal glands, and our glands shut down until we are done with the steroid medication. Then our adrenal glands kick back in, like clockwork. VERY rarely someone's adrenals do not kick back in, and they are ultimately then a person with Addison's Disease ... it just takes forever to figure it out). It doesn't make sense to me that your doctors would tell you that Addison's in toddlers is rare, when ALL people with primary Addison's had/have the disease when they were toddlers! Unless your son had a secondary case - was he recently on steroids for anything?

I don't mean to sound insinuating, I just don't understand why you would have been told that. Then again, if you have seen the pediatric endocrinologist yet, I'm assuming that the same doctors who couldn't diagnose your son are the ones who are now telling you this...

It never makes sense when a young child is lost so young, and again, I am so sorry that you and your family are going through this. I will keep you all in my thoughts and prayers, and please let us know if you find anything else out.

misababy primary adrenal insufficiency means it has to do with the adrenals themselves and it can also be acquired. Secondary Adrenal Insufficiency has to do with the hypothalamus or the pituitary. It can also be acquired. I suppose it doesn't matter which one it was for mommyfaith as she lost her little boy. I'm so sorry for that.

Incidentally mine was caused by mold exposure. I've also heard that Lyme disease can also cause it as well. My understanding is that the mycotoxins from mold exposure and the endotoxins from one of the infections from Lyme disease pass the blood brain barrier and cause the messaging to get messed up somehow.

Mommyfaith, my heart aches so for you.
I think you should keep the appointment with Joshua's endocrinologist for two reasons. It will help you understand the impossible thing that has happened to your baby and it may educate this clinic that this type of symptom needs instant investigation. Not when there is an 'opening'.

There is a congenital adrenal hyperplasia that some times is termed as Addison's. This is a separate condition from primary and secondary Addison's.

My heart is heavy hearing of your loss. God bless you and lift your aching heart and soul. May you feel God's comforting and loving arms around you. I am so sorry for your loss.

I too, am sadly, not surprised at the failure to diagnose. Sad, and also angry! It makes one ask how an endocrinologist can nail the diagnosis so quickly, and yet, the signs were there for the other doctors. Why didn't somebody do a simple test?!! I wish it would have been me instead of your son. (I am 59). Someday God will give us the answers to these questions. Until then, His promises are our only comfort.

My diagnosis of Addison's disease has come after three years of doctors visits, surgeries, testing, and as a last ditch effort to find out what was causing my symptoms, which had grown life-threatening. My physician sent me to an endocrinologist in April when I was quickly diagnosed and got on treatment. In the meantime, there were many hospitalizations and near death events with no explanation. We recently found out that it costs physicians money when they refer to specialists. Something to do with what the insurance company will pay them if they refer their patients out to specialists. They get penalized somehow. My husband asked our endocrinologist if he didn't think that would be in violation of their hypocritical (sp?) oath not to refer when they knew they should. The endocrinologist said no; that he thinks it is a business issue, not a moral issue. We will be looking for another endocrinologist in the future. Please continue to reach out to others for love and encouragement. There are so many loving people in the world who DO care, and Do want to help. I will keep you in my prayers.

Please do not hesitate to email me if you want to or need to talk to somebody.

I am so sorry for your loss. I was just diagnosed with it and for you to lose your son to this disease because of no one listening is how I got it. I think you should take the pictures with you and let them know that they have to check everything especially when a mother is suspicious about something in her 2 year old child. Believe me I know how hurt you are. It would have taken a clean catch urine test to prevent mine but they didn't do it. I had sepsess twice and it caused too much strain on the Adrenal glands thus the Addison's. You are in my prayers and I am praying that no one else has to go through this.

I am so sorry to hear your story. I know sorry doesn't help much but just know someone cares. I can't even imagine what you are going through. I would be lost if someting happened to one of my 4 kids.

Just a suggestion, write down memories of him with the pictures you have while they are the freshest in your mind. This will help you get past the worry of losing the memories. I have been told it canhelp with the greiving process. I know he will always be close to your heart. Your angel is in heaven now and only God knows the reason why it had to be so soon.

I am so sorry for your lose, I can not imagine how hard this must be for you.

I find all these things so strange, from what I have been told, I was born with Addisons, although I was not diagnosed till I was 13. I had the dark skin, and my mom asked my ped, and they sent me to a endrocronlogist and I had a blood test done, and that was that. I have been on the meds since I was 13. I am surprised at times about what this disease can do, I have been really lucky. I am so sorry again for your lost. I will keep you in my prayers.

A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...

theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??

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